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  1. 3 points
    Isabelle49

    Confused about everything almost.

    Jimmy’s Lisa, I recently encountered the same type of doctors. Pulmonary was optimistic, but fairly neutral, oncologist was negative and radiology/oncologist was very positive. Just kind of strange really. So sorry that you and your husband are going through this. Bless you.
  2. 3 points
    Steff

    Confused about everything almost.

    Hi Lisa, Welcome here and unfortunately welcome to the roller coaster ride of lung cancer screening. Has your husband been diagnosed with lung cancer yet or are the scans and other tests just pointing to lung cancer? A definite lung cancer diagnosis usually comes from some sort of biopsy and it's really the only true way to know if someone has lung cancer and what type. After a biopsy, the sample is often tested for any biomarker/genetic markers that can help identify if the lung cancer has any special characteristics that can be helped by targeted treatments. If/when your husband has a definite diagnosis of lung cancer, be sure his biopsy is having these follow up tests. All of the scans your husband has/will have will then help with assigning a "stage". Stages are mainly for aiding in the docs decision of the best way to treat the cancer - surgery, chemo, radiation, immunotherapy, targeted therapy, etc. As you have described, this process is a roller coaster. Everyone here, whether they are the patient or caregiver has gone through it. We understand how you are feeling. I like your idea of keeping a notebook...I keep one too - it's the only thing I feel I have control over and helped me to feel better. I was also able to catch a few things with my mom that docs weren't catching. So, it sounds like you are off to a good start. If I could make 1 suggestion - if you haven't already, head over to LUNGevity's main website and check out Lung Cancer 101. There's lots of great info and checklists you can use during doctor appointments. This site was a lifesaver when my mom was going through her diagnosis of her lung cancer recurrence. Take Care, Steff
  3. 3 points
    Most of the time, I just go with the flow on this whole cancer nonsense. But yesterday aggravated me. I had lab work done last Thursday for yesterday's CT. While I was waiting in the lab, a nurse came to the lab to tell me I was scheduled for a port flush. I said I wasn't because it would be flushed when I had my CT. She insisted so I just let her do it. She went too fast, skipped a step, and bruised my chest. Fast forward to yesterday. I had my port accessed for my scan. Different nurse said that last nurse's actions aren't what made my port area sore. Excuse me? How many thumb-tack sized needles have you had pushed into your chest in the last week? None? Then you don't know! Rant over. Just figure some of you can probably relate. Have a good day, friends. Remember - forward is forward; speed doesn't matter.
  4. 2 points
    Irwin1

    Confused about everything almost.

    Almost the same exact thing happened to men. Thoracic Surgeon very positive oncologist and pulmanary doctors not so good. I am going through the diagnostic screening process now and the roller coaster ride is a good analogy. Feeling like a yo-yo is good. I found that waking up in the morning and seeing how I feel is much better than asking the doctors how I am. If I am feeling good today then the heck with what the doctor says. I will say that today I feel okay..I don't know how I will feel tommorow or the day after that. But if I am okay I am not going to let what a doctor says to take away how I feel on that day. Or at least that's how I feel about it
  5. 2 points
    Charles

    Durvalumab

    hey Barb you're right but it is what it is though right? Time has come for an assessment because toxicity has come into play and we must deal with that before trudging on. I am already a type 2 diabetic and I get dizzy when glucose levels are too low (under 90) or as long as they don't stay too high (over 200) for too long. The Imfinzi did affect levels and the Prednisone really makes them go up so I am monitoring more closely also, but onward we go. Will continue to post and monitor here though. Charles.
  6. 2 points
    LouT

    Confused about everything almost.

    Lisa, Sorry to hear about your husband's problems. Everyone here can relate to what you're feeling as we've all had to go through it ourselves. At this point the world must seem upside down and sideways to you all at the same time. You're going through the diagnostic process and it sure can be a confusing time. Mine was up and down; one minute being told that I was okay, then they weren't sure, then more tests...wow, it was a ride. At this point just take it one step at a time...try not to jump ahead of what the doctors say but listen as carefully as you can, take notes (I see you've started that) and always come with any outstanding questions you have (written down also). I thought my doctors (pulmonologist and thoracic surgeon) were saying different things at one point so I raised what I thought were conflicting statements and learned that they were both on the same page, but looking from their viewpoint...diagnostician versus surgeon. If Jimmy is already showing symptoms as you describe he'll likely be getting chemo and/or radiation treatments. I had a non-symptomatic nodule that was detected by an unrelated CT Scan that resulted in a lobectomy for me. But, others here have experience with chemo and radiation and will be able to answer any questions you have better than I. But, this is a difficult time so please try and do some self-care while you're going through this with you husband. You need to be healthy and strong to better support him and that means well-fed, rested and relaxed (as much as possible). It's okay to take time for yourself, so please take care. There are great folks on this forum; so feel free to share, ask questions or just chat as you need. Lou
  7. 2 points
    BridgetO

    Saw My Thoracic Surgeon Today

    Hi irwin, "Inoperable" sounds scary, but it's not the same thing as "untreatable". If it turns out you have cancer and aren't a candidate for surgery, there are a LOT of other treatment our there, and new ones are being approved often. So, hang in there and don't get ahead of yourself. I know that's hard to do. I wish you all the best. Bridget
  8. 2 points
    Isabelle49

    Gained 5 pounds in 5 days?

    Should weigh on same scale, same time of day, wearing same weight of clothing each day. Scale should be on a hard floor and patient bladder empty. With the weight gain, I would look for foot/ankle/lower leg swelling, abdominal swelling - these should be reported to the doc. One other thing, a scale is a machine and machines are not always right. Hoping all is well.
  9. 1 point
    Irwin1

    Saw My Thoracic Surgeon Today

    Starting from the beginning May 20 pulmonary Dr sent me stat to the ER because of severe lung pain when I coughed.He thought that it was heart attack or embolism. After CT scan in the ER I was told that I had a 5.5 mass on right lung. A needle biopsy came back negative but the oncologist sent me to a PET scan. PET scan turned up positive on the mass with what I thought was one positive lymphnode but ended up to be a whole group of lymphocytes. He mentioned that it may be stage 3 something. He sent me to a thoracic surgeon. The surgeon today was great. It was obvious that he really understood what goes on in the chest and instead of a doctor that could merely read a report,this surgeon was actually able to understand the CT and PET scan. The bad part is that I have now been emotionally bounced all over the place. The surgeon wanted a newer CT scan and he ruled nothing out. He said that when he sees the new CT scan that the results could mean that I don't even need a bronchoscopy because the pneumonia is resolving along with the mass. He also went to the other extreme and said that if it was cancer it was inoperatable. The new CT scan is this Friday. So I have been emotionally been bounced all over the place. It was placed in my head that I probably had a cancer that may have been at a stage that was operable. Now I am going to go under general anesthesia for the bronchoscopy and when I wake up it will advanced local either small or nsclc. The surgery is a week from Friday. I am an emotional mess and trying to adjust to my new circumstances. BTW,On the CT scan the surgeon said that my right diaphragm was pulled way up on my original CT scan. He said that it may have been caused by the mass pushing on a nerve.
  10. 1 point
    Rower Michelle

    Confused about everything almost.

    Hi Lisa, My friends here have given you some good information to get you through this very difficult time. We went through the shock of this through multiple PCP and Urgent Care visits last summer when finally a very smart nurse ordered a CT scan. First and foremost, we tell everyone to stay away from Dr Google. There have been so many emerging treatments that it’s impossible for even the doctors to keep up with the science. Second, there is life after a lung cancer diagnosis, albeit a new one, our condition is managed as a chronic illness. For now it’s one day at a time and sometimes one hour at a time. The emotional roller coaster is a ride no one wants to take. Give yourself permission to adjust, we’re here to help carry you through. With each passing day it does get easier. The diagnostic process unfortunately doesn’t move as quickly as any of us like, so the waiting is really hard. Once you’re through all the tests and scans you will feel a much greater sense of control. Once you have a diagnosis, find an oncologist who specializes in the specific type of lung cancer. You’re in Texas so if you’re near a major academic center that will make your life much easier as comprehensive cancer centers do a great job of managing the complex schedule. Let us know what questions you have and we’ll all pitch in to help. Michelle
  11. 1 point
    BridgetO

    Confused about everything almost.

    Hi Lisa, Others have given you some great advice and I don't have anything to add except welcome here and keep posting. Let us know what questions you have and how we can support you. Bridget O
  12. 1 point
    Tom Galli

    Confused about everything almost.

    Lisa, One thing I can report with certainty about everyone on this forum: we all went down the diagnostic wormhole and all of us survived. There are lots of tests, unknown-unknowns, fear and confusion, but all of us survived diagnosis. The objective of diagnosis is the design of a treatment plan and lung cancer today is very treatable. Here are some tips and tricks I accumulated during my diagnosis and early treatment phases. Fortunately today, there is more than hope available as treatment. One more thing, I'm a 15 year survivor of late-stage diagnosed NSCLC and also a Texan. If I can live, so can your husband. Stay the course. Tom
  13. 1 point
    Irwin1

    Saw My Thoracic Surgeon Today

    Thank you for the encouragement! I think I should appreciate that I can have some sort of treatment. But it is very kind that you took the time to reply to me. May God bless you for this!
  14. 1 point
    Spanmer

    Looking for some hope

    Thanks for your inspiration it really helped. Fingers crossed the chemo works
  15. 1 point
    LouT

    Introduction - Isabelle49

    Isabelle, Glad you are liking your Rad-Onc and good luck with your next phase of testing. You brought up telling your kids before and I gave a general kind of answer. I'll start by saying that while every family situation and dynamic is different we all have some similarities. In my case I have two daughters; one, single, a professional, living in NC, 15 minutes from us and the other a nurse, married, children and living in Chesapeake, VA. In my case I would only get a definite diagnosis during the surgery (Open-Thoracic Biopsy) on my lung so I couldn't wait for final definitive testing before telling them. It is hard to look at your kids (regardless of their age) and share information like we have all had to share. I discussed holding off until after the surgery (on the 10% chance that is was a benign nodule), but my wife reminded me how close we were as a family and that my girls would be angry with me if I didn't tell them and they could only find out after I had surgery, so three weeks before surgery I told them. My younger daughter (the planner) was initially very upset, but strengthened very quickly and asked me what I was going to do to make sure I recovered well from surgery (she is also a bit of a health nut). From then on, she "managed" things for me (for which I was quietly grateful) from my pre-op appointments to arrangements for make sure my wife would be okay while I was in the hospital (my wife is in early-stage Alzheimer's). My older daughter (who always seems very controlled) didn't blink when I told her, but kicked into "super-nurse" role and made plans to come down and stay with me to bring me back to health. She also gave me a list of things I was to watch out for and to tell my doctors and nurses while in the hospital. When I got home I really didn't need her to come and since she has 5 kids, including 10-year old triplets, to care for I finally convinced her to not come, but to make a shorter visit later on. But she checked on me constantly and provided some very good coaching. Sorry to drag this on a bit, but I just wanted to show you that our children can be pretty resilient. In my case my daughters became part of a support system I wouldn't have had without them. They also felt that they were part of my process and could contribute to a positive outcome (which they surely did). I am grateful for them and glad I made the decision I made. I realize children of different ages would require different approaches for something like this, but they can bounce back better than we sometimes think they can and become part of your support system. I'm sure you'll do what is best for your family, but I thought I'd share my situation to offer any help it may provide. My prayers continue for you, Lou
  16. 1 point
    Curt

    Saw My Thoracic Surgeon Today

    Let’s hope it’s just pneumonia clearing.
  17. 1 point
    Isabelle49

    Introduction - Isabelle49

    Thanks Michelle
  18. 1 point
    Isabelle49

    Introduction - Isabelle49

    Saw Rad-onc today. I like him, seems genuine, said some positive things. Will have MRI of brain on Saturday and depending on results will start chemo/rad on July 1. The machine in use is the only one in New Orleans: Varion Trilogy linear accelerator. I did a look up on it and sounds very techie!!! So, will see. Will probably talk to my girls after I have the MRI results, so that will be very hard. How do you hurt someone so badly that you love so much?
  19. 1 point
    Blossomsmom

    Gained 5 pounds in 5 days?

    Thanks Tom, I’m pretty sure her weight gain was run by her oncologist. NP did say her lung sounded clear so I take that as a plus. Just makes me nervous. So many complications to worry probably needlessly over. I wish sometimes I could be one of those people who’s mantra is “what will be will be”. I try but fail miserably at it. And I too over think vacations which is why I usually don’t enjoy myself until at least day 3 of most vacations. But that, I am getting better at!
  20. 1 point
    Tom Galli

    Gained 5 pounds in 5 days?

    Blossomsmom, You are right about the weigh-in and report routine. During my chemo, my weight varied a lot; mostly down but large upswings when my wife could stuff me with ice cream. When variance was noted, I'd take a seat while the chemo nurse consulted with the on-call oncologist to determine suitability for treatment. It is hard not to overthink; this admission comes from the one who overthinks everything always. And of course, my overthinking always leads to over reaction that leads to panic and et cetera. So I'm guilty but must admit that my overthinking never led to thoughts that eliminated my weight variance. Today, I overthink when planning vacations and this is a much better use of my time. Stay the course. Tom
  21. 1 point
    Susan, So, you had an encounter with a Carly Simon nurse! (I'll let that percolate to display my advanced age and vast vein puncturing experience). Thankfully and most hopefully, my treatment mayhem is over but not blood donation. At every oncology consultation, job one is drawing blood and I always seem to get the new idiot that doesn't read the memo! The worst is the admonition "don't worry, it's just a little stick." My response is always "want to trade places." Others may read this and therefore I'll link my tome on blood letting for reference. As always... Stay the course. Tom
  22. 0 points
    I haven't had genetic testing done. I wasn't sure if this would be considered transformed to SCLC after NSCLC since there was such a period of time with NED. The term transformed has not been used for my case as I was told this is a new cancer 4.5 years after my previous cancer was removed, but maybe I need to ask more questions and I will. Yes, initial pathology reports indicated no cancer, but my slides were sent for further testing at Mayo which is where the SCLC was diagnosed. Thank you all of you for your responses. Right now I am just swimming in a lack of information for situations such as mine. While I can find adequate information on both SCLC and NSCLC, I am finding basically nothing on cases similar to mine.
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